Wednesday, July 9, 2014


I don't want to forget these things. I don't want to look back at their early years and wonder where it went.

It's going fast, friends. Really fast. The days are slow from time to time but the months and the years...yikes. Summer is here, and almost gone it feels. We're trying to live it up the best we can, and I don't want to forget it!

Here are a few tidbits since the last time I posted:

Both kids are taking swim lessons and loving* it! *That was a hard fought love from Gracie Mae, she really really hated it at first.  She didn't mind the swimming, but the male instructor? No, thank you! She has always had a problem with men.  From her infancy, she was fine with women but when a man would try to hold her other than Daddy, she'd get pretty upset about the whole thing.  Our first male pediatrician when we moved was a rough change on her and now this male swim instructor thing was quite the to-do. She screamed bloody murder for the entire first two classes. The.entire.class. I thought about getting her a female instructor instead, but then where's the growth in that? It was painful for those two weeks. She told me over and over that she didn't want to go see "Mr. Chet" again.  But we made it through, and with a little extra coaxing and the thought of her ice cream reward if she didn't cry, Grace made it through our last swim lesson without tears (ok, she cried at the very beginning but then sucked it up and moved forward. I'll take it!). She had to skip this week because of a recent 103 fever and some lovely diarrhea, so hopefully we haven't lost all of our momentum.  Although I'm pretty sure that child would do just about anything for ice cream...

There. I did it, Mom. Now take me to my reward!

It probably helps that I let her pick her toppings...there's some nasty combinations in that bowl of frozen yogurt...

The funny thing about it is that Grace swims like a little fish at home. She just wants to go back and forth and back and forth, no fear whatsoever in our pool.  A little too bold, honestly.  She inhales water on the regular but just keeps trucking...ha! Coming from an ex-swimmer, I'm a very proud mama.  I loved the stories my mom used to tell me of my early swimming days.  She taught me to swim herself and I was swimming across the pool by 18 months. All I wanted to do was go back and forth from one side to the other. I adored it.  I remember not wanting to go to swim practice when I was five years old, but oh how I loved to swim. It ended up as a pretty lucrative deal- paid for a pretty stellar college education. Not to say that I'm banking on my next little swimmer diva, but it's fun to see that she enjoys it as much as I did. I'm hoping it lasts- it's such a wonderful sport.

Caleb has also started lessons and it's been such a great experience for him! He absolutely hates being on his back in the pool and last summer taking him into the water at all was a hot mess. It was overly stimulating for him and he'd get so excited that he'd flap and rock too much in the pool- we could hardly hold him.  This summer, we wised up and got him a floaty so we don't have to have hands on him directly all the time- much safer for everyone involved. But we also wanted to try and improve the behaviors, teach him a different attitude about the water.  So we started the swim lessons and it's been amazing. He isn't exactly comfortable on his back yet, but he'll do it for short periods of time now.  He earned a blue "I Did My Best Today" ribbon yesterday at his lesson for blowing bubbles for the first time and almost climbing out of the pool on his own- a HUGE feat for a little man lacking coordination and muscle tone. He usually just opens his mouth when he goes underwater- creating quite the panic in this mama. He has documented swallowing issues and I worry that when he inhales the water, he doesn't cough it out. Have you heard of delayed drowning? Yeah, paranoia but it's real. So we haven't really been able to put his face in the water because he hasn't grasped the "blowing bubbles" or "closing your mouth and not inhaling water" concepts yet.  But yesterday he actually blew bubbles one time during his lesson and we all broke out into full blown applause for him! Hopefully it was the first step to actual water safety... :)

ps- I was always firmly against the "participation ribbon" idea when I first became a mother. Now look at me posting pictures of my son's "I did my best today" ribbon! Philosophies change as circumstances change amiright?

What else? Oh yes, the movie buff. We have an addict on our hands.  I felt so proud of the limited screen time the kids got before they were about two years old.  Too proud. I think I celebrated it a bit much with a down pour of Disney movies over the past six months. Now, my daughter won't stop asking for it. "I wanna watch a moooooobie!" Consequently, moobie could mean smoothie or movie- both things she has become incredibly fond of.  Luckily, she'll quickly let me know which moobie she wants to watch to avoid any confusion. She's particularly fond of Hercules and Tarzan right now. I'm now particularly opposed to both. There's only so many times I can try to gently tip toe around an explanation that the baby monkey was eaten by the cheetah... "What happened to the baby monkey, mommy???"

She hasn't let go of her princess movies altogether, don't you worry.  She would rather live out those screen plays though, it seems. Did I mention I took her to get her first mani/pedi with mommy? She went for a girl's day with Nana, Aunt Cole, cousin Kate, and Mommy the first time and then I took her back a couple of months later. She was skeptical, but absolutely loved showing off her pretty nails afterward...a bit of a princess indeed.

She has also become acutely aware of her clothing and has an intense desire to dress herself in the same three dresses every single day.  No, not on a rotating basis. She'd like to wear all three dresses  Sometimes on top  of each other. Sometimes on a twenty minute rotating schedule. One, she calls her "Elsa dress". It's the blue dress she's wearing in the ice cream picture above. It's blue. So it's Elsa, obviously.  Then she has her "Anna dress" that is the same cut, from H&M (a gift from her uncles!!) but is pink with tiny butterflies all over it. I think I named it the Anna dress the first day she got it and it stuck. It stuck very, very firmly. Then there's the Cinderella dress.  Oh, the Cinderella dress. A point of contention. This was a hand-me-down from her cousin Kate and it has a flowy pink skirt attached to it so she likes to twirl in it. It's unfortunately a size 18 months...this is my two year old whom everyone thinks is four...  The dress has been vetoed completely at this point, but for some reason it continued to find it's way into her room- through laundry mishaps or storage adjustments. And the tantrums and meltdowns that would ensue if this sweet little girl caught a glimpse of that Cinderella dress were epic and dangerous. I think I may have burned it in a drunken fit a few weeks ago. We haven't had a tantrum like that since.
Not the infamous dresses, but some of her favorite dress-up clothes, which she would also be completely fine wearing all day every day.

Speaking of drunken fits- I'm leaving for Vegas today! B and I are getting away for a few days sans kiddo's!!! Oh man, I can't wait to drink without harsh consequences for a couple of days. Thanks Nana and Papa for this beautiful, beautiful gift. I promise I'll be a better mother and daughter when I return. At least for a few months weeks. Under promise, over deliver...fingers crossed.

Ok, a Caleb update. I think the last time I shared the PVL diagnosis as our most recent.  We have had a few more added since, of course. It's sort of a given that we get a new diagnosis every quarter or so around here. {sad face} I have to tell this story- I got a call on a Wednesday morning while I was at work a few weeks ago from CRS- the clinic that handles most of Caleb's specialties.  It was the genetics department and the message stated that they had finally received his Exome test results and the doctor would like to push our August appointment to a sooner date. Please call back asap to schedule. Um, whoa. We did this test back in December. I knew it would take about six months, but wasn't too worried about anything big coming back. Then one of my closest friends got her daughter's results back from the same test about a month before this phone call and it was bad. Very bad. And I spiraled. I was at work but as soon as I got that message I dropped everything to call back. They didn't answer. I called again and left a message. About twenty minutes later I decided that was long enough to wait for a returned call (ha) and called the clinic front office to find someone who was actually at their desk. I got someone who was empathetic and went on the hunt for me. I finally spoke to someone to schedule and they told me that she'd like to see Caleb, myself, and my husband as soon as possible- she likes to go over these results in person. I freaked out. Then she told me the next available was the following Thursday...over a week away. I sorta begged and pleaded for anything I could get over the phone. She proceeded to tell me that she can't read the report, it's too long and she's just a receptionist. Great.

So I waited a week. I slept about five hours that entire week.

We get to the appointment and my heart was racing. She came into the room and started asking about Caleb's development and how he's doing. Then she asked about when we're putting him in school. School? I'm waiting to hear whether or not my kid has some sort of disorder that in my fears could change our entire futures and your asking about school? So I had to ask her- what were the results from the test?  "Oh, well, they aren't very conclusive..." Wait, WHAT? Why am I here? Why did my husband need to get out of a critical meeting to also be here? Why couldn't you tell me that when I scheduled the appointment??? She went on to tell us that Caleb's results showed two mutations. One he inherited from me, one from B.  The one from B is recessive and I don't have the mutation so Caleb is just a carrier. It causes intellectual disability, but it shouldn't be the thing that explains everything since it's recessive (unless some other gene of mine that they're unaware of is interacting in a way they're unaware of...basically inconclusive). The other is a bit trickier.  Caleb has a genetic mutation they've never seen before.  His MAP7D2 gene has a mutation- it's an x chromosome mutation, and he inherited it from me. I don't know much about this, but I know that because I have two x chromosomes, I could shut it off. Because he's male and only has one, it may be impacting him. It may be the cause of everything. Or it could be the cause of none of this. There's no way to know. They've never seen it. Of course, the test has only been made available in the last two years, so the sample size is about 7000 people, not huge. There's a chance that they'll see it more as more people get the test done. They will be following Caleb and will let us know if the mutation pops up anywhere else. For now, it doesn't help us much at all. It's good to know, I guess...

What else with little man? Oh, he's getting eye surgery on the 29th of this month. His eyes both started drifting outward several months ago and we are working with one of the best pediatric ophthalmologists in the area. He's been on eye drops to blur his "stronger" left eye (we tried to patch it at first...ha, that was a fun exercise) for about four months and the right eye is getting a bit stronger so we're going to go ahead with the surgery to cut the muscles around the right eye and re-align it with the left. It's an outpatient procedure but we have to put him under general anesthesia so he can't move. I always hate when we have to put him under, but it's been fine every time so hopefully this goes the same. The problem with this surgery is that it's attempting to fix a problem externally that's rooted within Caleb's brain. So we will likely have to repeat the order to avoid a loss of his vision. If his eyes drift, his brain will attempt to shut one or both of them off because it can't process the images. So we need to keep the eyes straight to avoid that from happening (that's a very high level explanation of what our doctor said...I'm just trying to keep up over here...).

One more little hiccup. We spent a night in the ER a couple of weeks ago because one evening I was changing Caleb's diaper and noticed his right testicle was about four times its normal size. Yikes!! I called B over to see and he told me to call the doctor immediately. Haha, it was actually pretty alarming to hear that from B. He's the "wait and see" guy. So when I got ahold of the on-call doc they sent us to the ER because that sort of thing could be very bad. Luckily it wasn't anything bad, just a hydrocele sac. I hadn't ever noticed it before, so no idea where it came from but it's just a painless sac of fluid surrounding that testicle. Unfortunately, Caleb had to sit through an hour long ultrasound of his scrotum at about 1:00 in the morning to figure that out...but such is life. We have an appointment with the urologist next week to make sure we don't need to remove it, fingers crossed.

Ok, I'm about 45 minutes late getting in the shower to get this vacay started! Wish my parents luck watching the littles for the next few days, hopefully Grace's fever goes down and Caleb doesn't pick up whatever she had (that would be a miracle from God if he somehow avoids getting this...and Lord, I'll take all the miracles you want to send our way... :)

 Wait! Just remembered- I haven't told you about Disneyland, have I???  Ok, it was amazing and made me cry and still does whenever I think about it. I want to live there. ...well maybe not live there. But you get it. I'll write a whole post about it. So many good, good things. :)